June 7, 2011

Congenital Amegakaryocytic Thrombocytopenia

After almost 8 months of testing, no answers, more testing, bone marrow biopsies, and even more testing, we have answers.

Answers that I never wanted to have.

Monday morning, Kate was diagnosed with Congenital (from birth) Amegakaryocytic (lack of megakaryocytes or large cell-making cells) Thrombocytopenia (without platelets) - a very rare (I'm talking less than 100 known cases in the entire world) genetic bone marrow failure.

Kate needs a complete bone marrow transplant as soon as possible.

We are shocked, terrified, heartbroken, and so upset that our sweet, innocent baby girl is about to be put through so much.

However, we realize we are also blessed. We have a support system like none other, live 15 minutes away from the best pediatric bone marrow transplant center in the country, have an amazing team of doctors, and most importantly, we serve a mighty God who will wrap His arms around my family and carry us through this journey.

I will update with more information as it comes in. Right now we are waiting for insurance approval (seriously insurance, we are talking about my baby girl - get on it so we can get started) so that the transplant team can contact us and start the process. Once Kate is "typed" we will start the wait for a donor.

I claimed this verse during my struggles with infertility and it seems fitting to claim this verse again. I feel like it is our verse for Kate, we just didn't know it would be her life verse when we were longing for a child.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11﻿

We are asking for any and all prayers. Please talk about Kate - add her to your prayer list, email your granny that prays all day long, get the word out.

Kate needs it.

Kate is a fighter. She proved that a while ago. I just wish she didn't have to fight this fight.

I know I have kept quiet about our journey to this point - I will post a bit more about how we got to this diagnosis later this week.

Lindsey, I want you to know that Kate will continue to be in my prayers. My friend Kellie's little girl had a bone marrow transplant ealier this year so I have an idea of what your going to be going through in the next couple of months. I'm glad you finally have answers, though it's not what you wanted to hear. (((HUGS)))

There are no words to describe how sorry I am to hear this news. I just saw your post on FB about how people can help by registering with the bone marrow center. While that helps to possibly find a match, is there a way that people can specifically ask to be a match for her? Is this similar to other type of organ donations where there is a list and people go in an order? I'm sorry to ask so many questions at a time when you are just processing everything. I'm just trying to figure out ways my family and I may be able to help. Big HUGS to you.

I am shocked, heartbroken and honestly speechless. My eyes are filled with tears and I can't imagine what you, Kate and your family are going through. PLEASE let me know if you need anything. I think Kate is the sweetest babe and this is something I can't imagine happening to her.

I remember how sick yet strong you were when you were in college and I know you have given sweet Kate that same "fighting spirit." Keeping you, Alex, Kate and the rest of your family in our prayers. Ms. Lynn

Linds, I don't know how you did it but this post is perfectly written. I had to take breaks though. My heart is broken but at the same time full of joy, it's just the weirdest feeling. I'm heavyhearted at the decisions you all face, but grateful that you now know the direction to head in. As you prepare for this road ahead...remind yourself to slow down and listen for His voice. Know that we are here for anything. I am so proud to call you my Bestest. Love you to pieces. I have my phone glued to my hip ready to stand in where I can.Nahum 1:7

Please do share this. The more people thinking about, and praying for, Kate the better. To those of you that have asked "how can we help" I will be posting about that within the next few days. Thank you for all of your support.

I've been following your blog for a while now as my daughter and Kate are very close in age. I am so terribly sorry to hear this and will absolutely pray for sweetie Kate and your family! My heart aches for you.

I have been reading your blog since before Kate was born since my baby was due in August as well, even though I ended up having an early July baby. I will keep your family and Kate in my prayers. She is a beautiful baby!!!

Oy Lindsey, I am so sorry for the struggles your family has experienced so far, and for those to come. Sick babies are the worst, and I can only imagine what you must be going through. Prayers going up for you all daily, and I'll definitely spread the word to get as many prayers as possible. <3 Love to you and Kate

I stumbled upon your blog last summer, and have been checking in ever since. Your daughter is so precious and beautiful! I have been praying for Kate and for your family's strength and will continue to do so. I signed up yesterday to be a bone marrow donor.

Hi!I know all about what you are going through, my little cousin Ben was diagnosed with this after almost 2 1/2 years of searching for what he had. This summer he had a bone marrow transplant, it was so hard. But I also claimed this verse. I stumbled upon your page when I was searching for more info on CAMT. My prayers go to adorable Kate, and your family.Much much love.Rhea

Hi Lindsey. So sorry to hear. My little angel had the excact diagnoses!!!! If interested we can chat privatly on facebook. I am Marie Moolmal Phillips! I travelled the road and all I can say, put every day in GOD's hands! Whould love to make contact with you?